<> <http://www.w3.org/2000/01/rdf-schema#comment> "The repository administrator has not yet configured an RDF license."^^<http://www.w3.org/2001/XMLSchema#string> . <> <http://xmlns.com/foaf/0.1/primaryTopic> <https://discovery.ucl.ac.uk/id/eprint/10126071> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://purl.org/ontology/bibo/AcademicArticle> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://purl.org/ontology/bibo/Article> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/title> "Quality of life in primary sclerosing cholangitis: a systematic review"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/abstract> "Background: Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact\r\nquality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic\r\nreview with four review questions. The frst of these questions overlaps with a recently published systematic review, so\r\nthis paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?,\r\n(B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are efective in improv‑\r\ning QoL in people with PSC?.\r\nMethods: We systematically searched fve databases from inception to 1 November 2020 and assessed the meth‑\r\nodological quality of included studies using standard checklists.\r\nResults: We identifed 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review\r\nquestions, with few studies included in each comparison, and small sample sizes. The limited evidence available\r\nindicated poorer QoL for people with PSC compared with healthy controls, but fndings were mixed for comparisons\r\nwith the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice,\r\nseverity of infammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No\r\nassociations were found between QoL and PSC severity measured with surrogate markers of disease progression or\r\none of three prognostic scoring systems. No interventions were found to improve QoL outcomes.\r\nConclusion: The limited fndings from included studies suggest that markers of disease progression used in clinical\r\ntrials may not refect the experiences of people with PSC. This highlights the importance for clinical research studies\r\nto assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specifc measure of QoL,\r\nto adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research\r\nstudies"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/date> "2021-03-20" . <https://discovery.ucl.ac.uk/id/document/1299011> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://purl.org/ontology/bibo/Document> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/volume> "19" . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/issue> "1" . <https://discovery.ucl.ac.uk/id/org/ext-df69af570ff4719131d9190cc31c0b76> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Organization> . <https://discovery.ucl.ac.uk/id/org/ext-df69af570ff4719131d9190cc31c0b76> <http://xmlns.com/foaf/0.1/name> "BMC"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/publisher> <https://discovery.ucl.ac.uk/id/org/ext-df69af570ff4719131d9190cc31c0b76> . <https://discovery.ucl.ac.uk/id/publication/ext-7efcef87cde018e2357898cac34aa5f0> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://purl.org/ontology/bibo/Collection> . <https://discovery.ucl.ac.uk/id/publication/ext-7efcef87cde018e2357898cac34aa5f0> <http://xmlns.com/foaf/0.1/name> "Health and Quality of Life Outcomes"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/isPartOf> <https://discovery.ucl.ac.uk/id/publication/ext-7efcef87cde018e2357898cac34aa5f0> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/status> <http://purl.org/ontology/bibo/status/published> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-ce7842b503556029841b4507832694f4> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> . <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_1> <https://discovery.ucl.ac.uk/id/person/ext-ce7842b503556029841b4507832694f4> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-3e10f21e9d6c3f58b755762cc2bc8787> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> . <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_2> <https://discovery.ucl.ac.uk/id/person/ext-3e10f21e9d6c3f58b755762cc2bc8787> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-3637596d3955934f2d4934e53d318783> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> . <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_3> <https://discovery.ucl.ac.uk/id/person/ext-3637596d3955934f2d4934e53d318783> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-db6f2ee15cc5e4b54131e902f6ce8458> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> . <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_4> <https://discovery.ucl.ac.uk/id/person/ext-db6f2ee15cc5e4b54131e902f6ce8458> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/creator> <https://discovery.ucl.ac.uk/id/person/ext-2fb4a0e96f7249c3050486551d64be96> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/ontology/bibo/authorList> <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> . <https://discovery.ucl.ac.uk/id/eprint/10126071#authors> <http://www.w3.org/1999/02/22-rdf-syntax-ns#_5> <https://discovery.ucl.ac.uk/id/person/ext-2fb4a0e96f7249c3050486551d64be96> . <https://discovery.ucl.ac.uk/id/person/ext-db6f2ee15cc5e4b54131e902f6ce8458> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> . <https://discovery.ucl.ac.uk/id/person/ext-db6f2ee15cc5e4b54131e902f6ce8458> <http://xmlns.com/foaf/0.1/givenName> "D"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-db6f2ee15cc5e4b54131e902f6ce8458> <http://xmlns.com/foaf/0.1/familyName> "Thorburn"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-db6f2ee15cc5e4b54131e902f6ce8458> <http://xmlns.com/foaf/0.1/name> "D Thorburn"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-2fb4a0e96f7249c3050486551d64be96> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> . <https://discovery.ucl.ac.uk/id/person/ext-2fb4a0e96f7249c3050486551d64be96> <http://xmlns.com/foaf/0.1/givenName> "B"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-2fb4a0e96f7249c3050486551d64be96> <http://xmlns.com/foaf/0.1/familyName> "Vivat"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-2fb4a0e96f7249c3050486551d64be96> <http://xmlns.com/foaf/0.1/name> "B Vivat"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-ce7842b503556029841b4507832694f4> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> . <https://discovery.ucl.ac.uk/id/person/ext-ce7842b503556029841b4507832694f4> <http://xmlns.com/foaf/0.1/givenName> "E"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-ce7842b503556029841b4507832694f4> <http://xmlns.com/foaf/0.1/familyName> "Marcus"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-ce7842b503556029841b4507832694f4> <http://xmlns.com/foaf/0.1/name> "E Marcus"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-3e10f21e9d6c3f58b755762cc2bc8787> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> . <https://discovery.ucl.ac.uk/id/person/ext-3e10f21e9d6c3f58b755762cc2bc8787> <http://xmlns.com/foaf/0.1/givenName> "P"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-3e10f21e9d6c3f58b755762cc2bc8787> <http://xmlns.com/foaf/0.1/familyName> "Stone"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-3e10f21e9d6c3f58b755762cc2bc8787> <http://xmlns.com/foaf/0.1/name> "P Stone"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-3637596d3955934f2d4934e53d318783> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://xmlns.com/foaf/0.1/Person> . <https://discovery.ucl.ac.uk/id/person/ext-3637596d3955934f2d4934e53d318783> <http://xmlns.com/foaf/0.1/givenName> "A-M"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-3637596d3955934f2d4934e53d318783> <http://xmlns.com/foaf/0.1/familyName> "Krooupa"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/person/ext-3637596d3955934f2d4934e53d318783> <http://xmlns.com/foaf/0.1/name> "A-M Krooupa"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/EPrint> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/ArticleEPrint> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/terms/isPartOf> <https://discovery.ucl.ac.uk/id/repository> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://eprints.org/ontology/hasDocument> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299011> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/Document> . <https://discovery.ucl.ac.uk/id/document/1299011> <http://www.w3.org/2000/01/rdf-schema#label> "Quality of life in primary sclerosing cholangitis: a systematic review (Text)"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://purl.org/dc/elements/1.1/hasVersion> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://eprints.org/ontology/hasPublished> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299011> <http://eprints.org/ontology/hasFile> <https://discovery.ucl.ac.uk/id/eprint/10126071/1/s12955-021-01739-3.pdf> . <https://discovery.ucl.ac.uk/id/document/1299011> <http://purl.org/dc/terms/hasPart> <https://discovery.ucl.ac.uk/id/eprint/10126071/1/s12955-021-01739-3.pdf> . <https://discovery.ucl.ac.uk/id/eprint/10126071/1/s12955-021-01739-3.pdf> <http://www.w3.org/2000/01/rdf-schema#label> "s12955-021-01739-3.pdf"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://eprints.org/ontology/hasDocument> <https://discovery.ucl.ac.uk/id/document/1299012> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/Document> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://www.w3.org/2000/01/rdf-schema#label> "Quality of life in primary sclerosing cholangitis: a systematic review (Other)"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://eprints.org/relation/isVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://eprints.org/relation/isVolatileVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://eprints.org/relation/islightboxThumbnailVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://eprints.org/ontology/hasFile> <https://discovery.ucl.ac.uk/id/eprint/10126071/2/lightbox.jpg> . <https://discovery.ucl.ac.uk/id/document/1299012> <http://purl.org/dc/terms/hasPart> <https://discovery.ucl.ac.uk/id/eprint/10126071/2/lightbox.jpg> . <https://discovery.ucl.ac.uk/id/eprint/10126071/2/lightbox.jpg> <http://www.w3.org/2000/01/rdf-schema#label> "lightbox.jpg"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://eprints.org/ontology/hasDocument> <https://discovery.ucl.ac.uk/id/document/1299013> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/Document> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://www.w3.org/2000/01/rdf-schema#label> "Quality of life in primary sclerosing cholangitis: a systematic review (Other)"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://eprints.org/relation/isVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://eprints.org/relation/isVolatileVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://eprints.org/relation/ispreviewThumbnailVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://eprints.org/ontology/hasFile> <https://discovery.ucl.ac.uk/id/eprint/10126071/3/preview.jpg> . <https://discovery.ucl.ac.uk/id/document/1299013> <http://purl.org/dc/terms/hasPart> <https://discovery.ucl.ac.uk/id/eprint/10126071/3/preview.jpg> . <https://discovery.ucl.ac.uk/id/eprint/10126071/3/preview.jpg> <http://www.w3.org/2000/01/rdf-schema#label> "preview.jpg"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/eprint/10126071> <http://eprints.org/ontology/hasDocument> <https://discovery.ucl.ac.uk/id/document/1299014> . <https://discovery.ucl.ac.uk/id/document/1299014> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/Document> . <https://discovery.ucl.ac.uk/id/document/1299014> <http://www.w3.org/2000/01/rdf-schema#label> "Quality of life in primary sclerosing cholangitis: a systematic review (Other)"^^<http://www.w3.org/2001/XMLSchema#string> . 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<http://eprints.org/ontology/hasDocument> <https://discovery.ucl.ac.uk/id/document/1299015> . <https://discovery.ucl.ac.uk/id/document/1299015> <http://www.w3.org/1999/02/22-rdf-syntax-ns#type> <http://eprints.org/ontology/Document> . <https://discovery.ucl.ac.uk/id/document/1299015> <http://www.w3.org/2000/01/rdf-schema#label> "Quality of life in primary sclerosing cholangitis: a systematic review (Other)"^^<http://www.w3.org/2001/XMLSchema#string> . <https://discovery.ucl.ac.uk/id/document/1299015> <http://eprints.org/relation/isVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299015> <http://eprints.org/relation/isVolatileVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299015> <http://eprints.org/relation/issmallThumbnailVersionOf> <https://discovery.ucl.ac.uk/id/document/1299011> . <https://discovery.ucl.ac.uk/id/document/1299015> <http://eprints.org/ontology/hasFile> 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